Sunday, January 1, 2012

Our Diagnosis Story

You never forget the day you get the diagnosis.

Around the time our son turned 18 months my husband and I started to notice changes in him, regression in his motor skills. Here was a little boy that had started walking AND talking by 8 months of age, had a growing vocabulary and an extraordinary memory. Then one day he started running on his tip-toes with his head turned side-ways instead of the direction he was going in, adapted certain security toys that he had to take everywhere with him, bathroom, dinner, errands and to bed. He started to not like certain textures (stickers), hated for his hands to be dirty or wet. He was lining up his toys versus playing with them. We started to notice he couldn't say words that he used to say all the time, his vocabulary was practically cut in 1/2, he could no longer walk down the stairs (something that we had to re-teach him at a later age) and he was having trouble feeding himself with utensils-something that he had already knew how to do. Not to mention his social skills with other children just weren't there. People would tell me when I suggested I thought he was showing symptoms that I should "wait and see" (the ABSOLUTE WORST thing you can do for a child with ASD because the SOONER you get them help, the more chance they have of reaching a high functioning outcome.)

After almost a year my husband and I were able to find the right people to evaluate our son for Autism. We moved and fortunate for us where we moved to had an Early Intervention Program that serviced the county we lived in. They do a series of evaluations for free.

The program we were set up with had a team of specialists that came out to our home 2-3 times a week for 3 hour visits over a month’s period. Our kids didn’t even know they were being evaluated. As far as they knew they were just playing with new toys and occasionally answering a question. As the testing progressed I could tell it wasn’t going well.

I tried to keep my emotional composure as she began to explain to me that not just one of our children had Autism but both of them did. I had NO idea that she was evaluating my daughter as well. We had suspicions with our son as we would watch how he played and interacted with other children. People would frequently tell me “Oh he’s fine. He’s just a boy!” or that he just had an abundance of energy but I always felt it was something more. Our daughter on the other hand was almost 2 and still didn't speak a word, wouldn't make eye contact with anyone nor respond to her name despite her hearing being great. We were so focused on the issues we were having with our son that we completely over looked our daughter’s lack of development. I had always made excuses that she was just a late bloomer.

At first I started to do what I think any parent would do and that was wonder if maybe it was something I had done wrong during my pregnancies. However we were told that studies are starting to show that Autism is around 90% DNA related (genetic). It doesn’t run in my family but it is common on both sides of my husband's family. It wasn’t Vaccines because I was that parent that refused them out of fear of Autism. As my thoughts began to progress down this path they were all somehow pushed out of my mind and I was left with only one: It didn’t matter what the reason or cause because things were going to be how Heavenly Father intended them to be.

When the Specialist left I sat down on the couch left with my thoughts and began to watch my children play. I couldn’t help but feel a sudden abundance of love and appreciation for them fill my heart. I think I knew in that moment as my son looked over and smiled at me that they aren’t just my children but Heavenly Father’s as well and He has trusted my husband and I with the sacred duty of loving them and caring for them.

I put my kids down for their nap and went outside and waited on the steps for my husband to get home from work. He pulled up in the drive way and without saying a word he sat down beside me and put his arm around me. As most parents that have been in our place, we took the news hard at first. Me more so than my husband, I think I cried for about 3 days. My husband and I agreed that we would allow ourselves 1 week to grieve and after that there would be no more grieving that we would then take this head on =)

I later called my family and my mom’s response was comforting after I told her. She said “You guys aren’t on your own. We’re going to work through and handle this together as a family.” At first we were sad because you have this idea about how your children are going to be and the things you will get to do with them like sports, marry them off, send them to college, shopping, finger painting, dance and family vacations. Then all of it comes to a halt in a moment. But every time I began to feel sad it was like a blanket of comfort was thrown over me. It felt as if Heavenly Father was present on each occasion. After some time went by and all the crying was done I realized that my children will still get to do all of these things, that we would just have to take a different route than other parents. I think sometimes parents will get this diagnosis and feel like all is lost and then put it on the back burner and not seek the help their children so desperately need to reach their full potential. They ignore it and think "it will work itself out." But that's not the case and all is not lost.

My husband and I have a good strong marriage and a wonderful relationship with each other. We are currently in the process of moving to another state to get the therapy they need. So having a strong marriage, love and patience in our home and getting them the help they need is the absolute best thing we can do for them. Right now we live in Utah <---#48 worst US State for Autism resources. So for the past 2 months we have been making a zillion phone calls to different school districts across the country, Autism research groups, talking to parents of ASD children through out the country, calling different insurance providers and as of right now we narrowed down our search to the great state of MISSOURI. There my husband will be able to finish his degree, my children will have insurance (our insurance provider dropped both of our kids for being Autistic-too expensive for them, cheap state), my husbands job is also going to transfer him and our kids will get the ABA therapy that they need. Only certain states in the US provide it. Many families with ASD children will move across the country to a state that provides this therapy. Missouri is also the Autism research capital in the US. Columbia University is currently pumping out 10 Autism studies alone and that's not counting the ASD studies going on at the University in Kansas City Missouri or the studies coming from other ASD centers in MO.

Our daughter is still and will always be our perfect, cute little comical Curly Sue who is a daddy’s girl.

Our son will always be my little sweetheart who showers me with hugs and kisses and favors me more than he does his dad ;) We wouldn't change anything about these little guys.

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